A Self Advocate Fights Oppression

Menu

Categories

Trauma and Childhood Surgery

Page

When I was about five years old, I underwent a major invasive surgery. I don’t talk about it often because it wasn’t exactly dinner table appropriate: I had problems when I was a child with UTIs because my urine would reverse along my urinary tract if I tried to hold my pee. Yup, refluxing urine. Sexy.

It had the potential to give me serious bladder infections throughout my life, and wasn’t responding to antibiotics, so in order to keep me from being in pain often and really fucking up my urinary tract, the doctor reimplanted my ureter to a better location so my urine would stay in my fucking bladder and out of my god damn kidneys.

Lovely right?

Some of my earliest memories are in the hospital, having tests done, and then having the surgery. At the time, it seemed like it was just an unpleasant experience. It happened and it hurt and I was utterly miserable for about four days of my life. I remember not really eating or sleeping at all. I remember puking a lot the first day because they couldn’t get my pain meds right. I remember peeing a lot of blood. That’s about it.

The day I got home from the hospital, it was like a weight had been lifted. I got hyped off of Coca Cola and jumped on my bed for two hours. The moment I was out of the hospital, it felt like I could move on. I continued my life and I didn’t think about it very often except that every time I drove past the Children’s Hospital in my city I shuddered and told my parents to get me away from the “Dreaded Hospital”.

Until a few months ago when my therapist asked if there was any trauma in my past. I shook my head, sure that my childhood was normal and safe. She pushed a bit, asking about violence or loss or surgery. Surgery? Surgery counts as trauma? Yes, apparently it does, and often leads to PTSD in children (particularly invasive surgeries such as the one I had and surgeries that require multi-day stays at the hospital, as mine did).

I’ve spent some time poking around the interwebs looking for more information about surgery and trauma, about what sorts of effects surgery can have, about why surgery is considered a trauma, and I’ve been having a really hard time finding much qualitative information that might shed some light on the connections between my severe dissocciative tendencies, my depression, my anxiety, and my surgery.

As someone whose natural impulse about things is to learn about them, to get information, to explore them from every angle, having an event in my past that I cannot research is unsettling to say the least. But more than that, I find it worrisome that the only resources I can find for parents of kids who are going to be going through surgery seem to be geared either at sudden and extreme accidents, or towards cancer.

It seems to me that once again mental health concerns are being ignored, even in a situation where someone is already receiving medical care and should be under close supervision of doctors. Why is there not a mental health professional involved every time someone goes under the knife? It’s a scary proposition, even if you’re prepped and feel fairly comfortable.

In addition, based upon my own experiences, I would hazard a guess that even if a child does not show immediate signs of PTSD after a surgery, there is a possibility that it could affect their mental health in years to come. Having someone around to teach them strong coping skills and help them process the experience could save the medical industry lots of money in the future (imagine if they hadn’t had to provide me 3 years of eating disorder treatment. Huzzah!) and potentially lessen a great deal of emotional pain for people who have internalized lots of fear and anxiety without realizing it.

It’s becoming more and more clear with research into neuroscience and neuropsychology that the experiences that we have as children deeply affect our brains. Even a limited amount of isolation can affect a brain for years into the future. Surgery can be isolating, it can be painful, it can force a child to deal with mortality, it can be overwhelming, and it can be confusing. These things can change the brain.

Typically a kid is coddled a bit after something like surgery, so you might not see the effects right away: they would be supported, they would have their needs taken care of, they’d have mom and dad around. This means they’re not going to be in a high stress environment where they might need coping skills. It’s only when they’re put into a situation that requires coping skills, or even a situation that feels remotely like their surgery experience that those effects might begin to pop up.

This is pure conjecture on my part, because as I said before I couldn’t find much by way of information, but I suspect that having something like this in one’s past would significantly increase one’s susceptibility to mental illness in the future, as well as potentially create some intense anxieties or fears that aren’t totally rational. Imagine that I’ve been seeing mental health professionals for over five years talking about anxieties and depression, and never once did they think to ask me whether I’d undergone any sort of serious medical experience. It took until this year for someone to even consider that having that trauma in my past might be related or might help me understand. 3

Why are mental health and physical health so bifurcated? Especially given the research that we’re finding that suggests that our brain is deeply connected with all sorts of other body systems, and that we rely on the same chemicals and hormones for all sorts of things, why on earth aren’t we integrating our treatment of mental and physical health? Why aren’t we sharing medical records between our mental health care providers and our physical health care providers?

It’s hard to express how frustrated I am about this, as it feels like an important element of my own health has been hidden from me, as if a doctor had found a gene that put me at a severe risk for cancer and neglected to mention it to me (I do recognize that when I was 5 the research on neuropsychology was nowhere what it is today, so it’s not as if I’m holding a grudge, but rather just feeling confused and hurt that with more information I perhaps could have avoided some of the shit that has been in my life in the past three years). I never thought that this could be an important element of my mental health, but the moment it was mentioned it clicked into place.

The feeling I feel when I am bored, when I feel useless, when I feel alone, is the same feeling I get when I think of my surgery. It’s hard to explain the sense that comes over me when I remember those days because it’s so visceral as to be nonverbal. That says something to me about its importance in grounding many of my other emotions and experiences of emotions. I feel as if I’m wavering away from myself when I think about it, but I can see my body stilling, the panic bubbling through my chest. My teeth clench. I lose the sense of my whole body. I remember the dark, the night, lying in bed unable to sleep with no one there, no one to speak to, nothing to do. It feels like it won’t ever end, it goes on forever because I can’t do anything. It hurts. I remember how much it hurt. I remember trying desperately to stay awake when they were putting me under, a bit confused about what was happening, but knowing that I wanted to keep talking to the people around me. I don’t want to go to sleep, I don’t want to go to sleep, but now hurts and I just have to sit in it because there’s no way out.

When I think about that, it’s hard not to see just how badly that experience hurt me, how it told me that my body was probably broken, how it told me that there was something wrong with me and that the only way to be safe was to always keep my mind safe and perfect.

I just wish I had known that I could think about it or talk about it or process it earlier. I wish I hadn’t kept it tucked away for 17 years. I wish someone had helped me. I don’t know that there’s a taboo around surgery, but I certainly think there’s a silence around it. I wish there were more people talking about their experiences, more ways I could find some sense of community or solidarity.

If anyone has more resources about these connections I’d love to see them, but until then I simply want to say that if anyone else wants to talk or needs support I’d love to hear from them.